Our house was our castle and our keep, our house in the middle of our street

Pretty much, my entire life lately consists of doctor visits. I think I average out to about one a week for the year so far. As I’ve written before, my pain levels stopped being “high but tolerable” some time last year, so I started going to a rheumatologist in hopes to figure out what the hell is going so we can fight back properly. The pain levels have still been increasing, so now I’m needing much better pain management than I’ve had in the past. I’ll be asking about that next time I’m in the doctor’s office, most certainly.

Outside of pain and doctors? Well.. there really isn’t much outside of that. Work is the same old ordinary work. And in the non-work hours, I don’t do much of anything, since I physically can’t. So yup, my life pretty much sucks. But I’m here, and am trying to find ways to combat against that. I miss having more of a life than I do now.

I guess the main thing I am doing when I’m not goofing around with Facebook games is spending time house hunting. Mom & I are finally going to move, really and truly this time. We don’t have to worry about selling the house; our neighbor wants to buy it. I spent a good bit of time googling what needed to be done to sell a house without a realtor, and downloaded the contract templates from the Texas State Realtor Board’s website. Now mom & our neighbor just need to have the inspection, settle on the price and fill out the paperwork before taking them to the title company, and possibly a real estate lawyer to finalize it all. Nice and easy! If only finding our new house was that easy!!

Mom and I are both incredibly picky, and it takes a lot to find a house with all the features we need/want. With my knees, I really need a 1 story house (and that’s one of the reasons we’re moving out of the current 2 story). Mom wants a townhouse or condo – fine by me – but most that we find that have enough space for us are 2 story, with both/all bedrooms upstairs. I would be okay with a 2 story townhouse, if there was a bedroom on the main floor for me, but we haven’t found one yet that is nice/is in our price range/hasn’t been sold right before we find it. I’ve also been spoiled rotten with our current house because we have HUGE bedrooms, the kind you rarely find in houses anymore. So it looks like I need to have 2 bedrooms when we move – 1 for use as an office, since my desk/TV/etc won’t all fit in these tiny rooms and leave room for my bed, too (or vice versa). Mom automatically “gets” the living room, and can set up her computer there if she doesn’t want to have it in her room.

We’ll also have to make sure that there’s space for Bennett (my hedgehog), and of course plenty of space for the cats and all their accessories. Mom wants a small yard or patio – just enough room for a patio table, a grill, and bird feeders. We both really want a garage, but we are willing to compromise on that – as long as the parking is immediately outside our house, and (preferably) covered. But a garage truly would be best – as I said, we’re spoiled. 😉

On top of all that, we need to make sure we have somewhere Emily can sleep whenever she comes to visit! And that is exactly what she’ll be doing in one week’s time. Only 6 more days until she arrives! I’m definitely looking forward to her visit, and it’ll give me reason to be out and about and doing things. Or, well, trying to do things. I do admit to a slight fear of being insanely exhausted and of my pain levels being stupid and impeding fun, but I’m determined to try to push through and have fun, dammit! 😉 Pain already gets to rule enough of my life as it is – I’m refusing to let it rule over vacation too.

I’ll let it pass and hold my tongue

I almost included this in my last post. I had the majority of it written, then paranoia and self-doubt came over me and I ended up cutting it out. I saved it, though, in case I changed my mind. Well, I am changing my mind now. More like forcing myself to change my mind, but either way, the end result is the same.

As I stated before, I wasn’t very happy with the first rheumatologist I saw. She was confusing me and my mom, and that lead to me not having much confidence in her diagnosis. I had been debating getting a second opinion, but hadn’t quite made up my mind yet.

Continue reading “I’ll let it pass and hold my tongue”

I’ve been better than this before, I know you’ve seen me be

I’m almost amused with the myriad of different ways I can find to instantly distract myself whenever I come to make a post here. “Oh look! These plugins need updates! Must fix now!” “That’s done, now time to write, wait.. who’s singing the song on my iTunes. Let me check that out. *pause* Oh yeah… I forgot about her/him/them. Let me go see if they’ve got any more stuff on iTunes I can buy/add to wish list for later.” And then I end up in a YouTube spiral, hunting out more music. Or I end up on Facebook or Twitter and completely forget I ever opened a tab to start writing. Sometimes, like just now, I get a phone call as I’m writing, asking what it was I needed to buy at Petco, so I end up spending way too much on their website, trying to remember what it was that I wanted to buy for Bennett, my hedgehog. Yup, I am most definitely a master of procrastination and distraction.

Life has been quite an adventure the past few months. I’m tired of always being tired and sore and in pain, so I started seeing a rheumatologist last year. The first visit went well, and blood work turned up a few interesting possibilities. I had a positive ANA test (1:160), which can suggest lupus amongst other diseases. The doctor shortly ruled lupus out, however this was at the same time she began confusing me with my mother; who was also a patient of hers. With her confusing the two of us, ma’s hand wasn’t properly diagnosed, and I was no longer confident in her stating that there was no chance it was lupus for me. I wanted the result to be “nope, not lupus”, but I also wanted to know for sure it really wasn’t, and that she wasn’t using mom’s history/blood work to come up with that diagnosis.

After getting a copy of my medical records from that first doctor, I sought out another rheumatologist, and had my first appointment with her at the beginning of the year. I instantly liked this new doctor, and felt more secure when she said “I’m positive it’s not lupus” after reviewing my files. She also ran a bunch of blood work, more than I’ve ever had done at once. I’ve joked that it was almost enough blood to be a donation, instead of a draw for blood work. That blood work turned up a bunch of interesting positives, several of which require further testing to know if they’re true positives or false positives. She also ran another ANA with this blood work, and this time it came back negative.

I’ve already seen one specialist so far, and he has me scheduled for a biopsy via upper endoscopy to confirm/deny celiac disease. From reviewing the blood work that the rheum sent over, he’s thinking it’s a false positive, but the only way to know for sure is the biopsy. I’ve also got an appointment with an endocrinologist coming up to see if I have thyroid problems, since my TSH came back abnormal. About 20 years ago, I had a doctor tell me she was convinced I had a thyroid problem, but all my tests have always come back in normal ranges. She had mentioned, back then, that it can some times take a while to actually show up in the blood tests. I don’t think she figured it would take 20+ years, though. 😉

In that initial blood work with the new rheum, there were also some issues with a few areas in my CBCs running high, and so she kept having me come back to get those rechecked. One of the repeated tests consistently ran quite high and that, combined with the positive Lyme disease test in my original work-up, made her decide to send me to an infectious diseases oncologist; once again to confirm/deny if it was a true positive.

I really do like this new rheumatologist. She is every bit as dedicated to finding out what exactly is going on with my body as I am. A few times, she’s commented to me that “A person of your age shouldn’t be in this much pain. We need to know what’s causing this.” It’s so nice to be taken seriously by someone, when you’ve got an “invisible condition.” A diagnosis is exactly what I want, probably more than anything. I know that a diagnosis is not a solution. But, to me, a diagnosis is hope. Then I’ll have a name for what I’m fighting. An identified foe, instead of a nameless malady. Sure, there’s always a chance that the cause of my head-to-toe pain isn’t curable. But knowing what it is provides proper treatment. It gives us something specific to target when trying remedies and ways to lessen the pain so I can attempt to lead a more “normal” life again.

I miss who I was before pain was a constant companion in my life, with its presence always increasing. I want to shove it back into the background again. I want to be me.